Genzyme and the National Organization for Rare Disorders (NORD) announced the creation of a fund to pay for standard diagnostic testing for people with rare, undiagnosed medical conditions. The fund will help those who have applied to the NIH Undiagnosed Diseases Program, but who cannot afford the basic medical tests needed to make them eligible to participate in the NIH program. In 2014, the program will expand to include a network of major academic medical centers across the U.S. The new fund is made possible in part by a team of Genzyme employees who run the Boston Marathon to raise funds for NORD services on behalf of all patients and families affected by rare diseases. Since 2008, members of the Genzyme Running Team have been paired with rare disease patient partners, and devote months before the Boston Marathon to training, raising awareness and fundraising. In 2014, the NIH Undiagnosed Diseases Program will expand to include a network of major academic medical centers across the U.S. The Genzyme/NORD NIH Undiagnosed Diseases Fund will support testing for patients applying to all clinical sites and, in particular, the new satellite centers. Patients applying to the NIH program who need assistance to pay for the required testing will be referred to NORD by the NIH centers. Since 1987, NORD has provided Patient Assistance Programs including free drug for patients who qualify on the basis of financial need, co-pay and premium assistance, and travel assistance for treatment or to participate in clinical trials. Currently, NORD administers approximately 50 Patient Assistance Programs.
